Consumer Involvement in Research and Decision-Making in Nephrology

Involving consumers (defined as patients and informal caregivers/family members) in research as more than ‘subjects’ is now globally advocated to improve the relevance, importance and quality of research. Growing evidence in the general population and some specific disease groups continue to demonstrate the benefits of consumer involvement in research, including alignment of research priorities, better recruitment/retention, unique insights in data analysis and broader dissemination and translation into policy and practice. Consumer involvement in nephrology research is essential in ensuring that all research is relevant to the very patients it is aimed to assist by improving outcomes. This chapter provides a summary explaining/defining consumer involvement, what is currently happening in this space in nephrology research and the impact of this involvement on patients’ participation in shared decision-making. This chapter includes a definition of consumer involvement, examples of involvement across the research cycle and consumers accounts of their experiences being involvement in research and the impacts of their involvement.